Most of my time lately has been spent in our planning for the Teepa Snow Event on August 30th. It has become difficult for me to find time for all that is taking place in my life. First I must stay strong in my faith. This is my anchor at all times.
I must manage the complexity of living with Lewy Body Dementia (LBD). I must have time for my family and enjoy the time with my grandchildren. Planning an event that will have 900 attendees is no small task. The dream of having Teepa Snow come to Thomaston, Georgia came to me in February 2015.
After talking with Kelly Creviston (Teepa's event scheduler) in March 2015, I found the earliest date would be August 30, 2016. As during my professional career as a pharmacy owner, my brain began to race with ideas of making this event a reality. My passion has always been in helping my patients in my pharmacy understand ways to manage their health issues through education, love, compassion and empathy. One year after my diagnosis of LBD (June 2012), I found this same passion for those living with dementia and their caregivers.
As I have traveled these last 18 months, God has sustained me through every step of the way. There have been many times that were difficult. There were times I did not know if I could keep going. During these 18 months, my neuropsychological test has improved.
Parkinson's symptoms have intermittently increased. Sometimes I have experienced freezing of gait and freezing of hand. Sometimes resting tremors as seen in Parkinson's Disease have occurred in addition to ever present action tremors that I have experienced since the age of 18.
Mental processing and retrieval have declined. Triggers and outbursts have increased. Visual and audio hallucinations have increased. Dreams, nightmares and dream acting have increased. Some nights are fully consumed without a break with these. Waking up in the morning, I often hurt from my toes to my shoulders where I have been moving and kicking all night long. Through constant brain stimulation with brain games, reading abstracts, reading other scientific literature and other readings, enjoying time with family, my memory has sustained and even improved from my first neuropsycological test. Those of us living with dementia cannot rest on our laurels and think that we will have the best outcomes.
Only through God's love, mercy and grace can I continue. Experiencing these things has caused my faith to grow stronger. The peace that God gives me is beyond human explanation. God continues to supply all of my needs. He never leaves me nor forsakes me. Even in the darkest moments, I feel his presence as He lifts me up and takes me through the valley.
God blessed me so much by bringing people into my life that have the same passion as I do...."WORKING TOGETHER WE WILL CHANGE THE CULTURE OF DEMENTIA". I must stay strong in my faith and have time for my family. Hours are spent daily in brain storming, meeting with key resources, and executing the final preparation for this big event where we will have 900 people in attendance.
Friends like Elaine Harrison and Ann Butts have been "Rock Stars" in their assistance. Last year Dementia Action Alliance asked me to be on their Advisory Council (all of us on this council are living with dementia). The co-leaders of DAA are Karen Love and Jackie Pinkowitz. They are truly amazing. Their understanding and passion for person-centered-care and the importance of hearing the voice of those living with dementia is always present. Person-centered-care is one of my main focuses because it provides hands on care that has an extraordinary impact on the person living with dementia. When this takes place, we will begin to see many positive changes in the area of care.
Several months ago, I met Robin Florence Andrews and Ryan Florence. They are truly outstanding people. Last week they set up a meeting for us. It was a power-packed meeting lasting 2 hours. Through it, we found many common goals in our vision for changing the culture of dementia. They are part of the leadership of Spotlight on Dementia Foundation. I explained to them the difficulties that I was now experiencing....the finite details of everything being in place. Ryan graciously offered to manage the event to completion. WOW, what a relief for me. Robin graciously offered to manage other parts of the finishing touches. Corrie Phillips with Teepa Snow graciously offered to manage another area. God provided!
Joy, joy, joy. It is so wonderful to see God's mighty hand at work as He brings people together with common visions and goals. All of the dementia advocacy organizations are working hard to make a difference in the world of dementia. Each organization has their vision and plan for making a difference. The end results will be a plethora of resources. Utilizing these resources will provide understanding, knowledge and support. These things will have a positive impact on both the person living with dementia and caregivers.
FIGHT LIKE A TIGER --- BE LBD STRONG
WORKING TOGETHER WE WILL CHANGE THE CULTURE OF DEMENTIA
©July 26, 2016 Robert Bowles
Robert Bowles, Jr.